Hi everyone—thank you for tuning in.
As some of you already know, Skylar was admitted to Primary Children’s Hospital in Salt Lake City as she begins the process for a bone marrow transplant. This is a major step in her journey. The hope is that this treatment will help slow the progression of her condition, beta-mannosidosis, until Enzyme Replacement Therapy—ERT—is ready in the next year or two.
Last week, Skylar was at the Ronald McDonald House for what’s called her “work-up week,” a series of tests and preparations before treatment. On May 9th, she was officially admitted to the hospital and received her central line in preparation for chemotherapy, which begins in the next day or two. Her bone marrow transplant is scheduled for May 20th.
Following the transplant, Skylar will remain in the hospital for about a month, and then she’ll begin 100 days of isolation to protect her as her immune system recovers.
If you’d like to support Skylar, we’ve set up a donation link on our website. All funds will go toward supporting the development of Enzyme Replacement Therapy—currently in progress thanks to the efforts of Kimonis Labs and JCR Pharmaceuticals. This treatment has the potential not just to slow the disease, but to stop it altogether.
Thank you so much for your continued support. Please keep Skylar in your thoughts as we enter these next critical weeks.
Wish us luck.
